Australian Nurse and patient navigating a complex healthcare system

General Eagle Syndrome Stories
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Hello fellow invisible illness warriors.

My life significantly changed after a ? Viral illness leaving me with dysautonomia/POTS, SVT and an ablation in 2010.

As my health continued to deteriorate, I was medically gaslight by multiple doctors, specialists in their areas of expertise and labelled as being mentally unstable, anxiety disorder and “just stressed” because I was a busy mum and career woman….sound familiar to anyone?

Fast forward 15 years and I’ve been diagnosed with hEDS, CCI Menieres Disease, MCAS, hyperadrenergic POTS, and undergone many unsuccessful medication and surgical intervention.

My career as a oncology director of nursing came to an unexpected early retirement 2 years ago because my QOL is minimal.

I’m existing not living. Nothing sparks joy anymore.

In sheer desperation I arranged last December to see my otolaryntologist who I trust with my life, whom quickly identified my suffering and symptom profile , finally someone actively listened and ordered scans for stylojugular syndrome which confirmed elongated styloids, pressure on R) IJV and involvement of C1, and wondering if there is vagus nerve irritation.

He has referred me to the one specialist in Australia Associate Prof Michael Elliott for his expertise and management.

This group feels safe, validating, knowledgeable and so supportive from what I have been reading thus far.

If anyone in Australia is in this group it would be lovely to connect.

I just watched an episode of RPA (For those in other countries this is a recognised hospital in Sydney and they follow and film.mefical surgical cases)

A beautiful lady “Jane” was treated by Michael Elliott and it gave me hope to keep seeking the care I need to regain my life.

Biggest hugs to each and everyone of you.

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Hi & welcome to the forum!
It’s just shocking how many people have been gaslit by the medical profession, it’s crazy that someone as knowledgeable as yourself & a health care professional could be treated like this too, we’ve had doctors here as members who’ve been treated the same, sadly…
I’m glad that you did find a doctor to listen & have been referred to Prof Elliott, that’s good to hear, are the waiting times very long?
If you want to connect with other members, you can send them a private message by clicking on their avatar, you might get more of a response that way as well as posting questions to them like you’ve done… We also have a new member who’s joined today, @julianne who has recently been diagnosed too, hopefully she’ll see this!
Glad that you’re finding the site helpful though :hugs:

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@Dangles - I was also diagnosed w/ Meniere’s after a cycling accident w/ a head injury & in between my first 2 ES surgeries. Six years after my MD diagnosis, I received a link to a research paper which demonstrated that in some cases, symptoms that are diagnosed as MD are actually being caused by IJV compression & when the IJV is decompressed, hearing restoration, to at least some extent, is restored. Do you have bilateral MD or is it just in your right ear?

I began investigating whether or not I’d ended up w/ IJV compression from my head injury & learned that I had - specifically on the side where I had MD symptoms & hearing loss. I had IJV decompression & a revision styloidectomy in 2024. Unfortunately, I’d had a surgery in 2019 to try to save my hearing that has left me w/ a secondary problem in my left ear so the 2024 IJV decompression didn’t restore any hearing for me, however, it did stop the progression of my hearing loss & the vertigo episodes I had suffered for 9 years so there was overall benefit.

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Thankyou Jules

Unsure of wait times, the Christmas season has delayed things a little.

I will provide updates

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Wow @Isaiah_40_31 what a road you have travelled.

My Menieres is unilateral R) ear only.

I developed sudden SNHL literally overnight, confirmed on audiology, and balance testing confirmed Menieres (so they say).

I underwent aggressive treatment including intratympanic dexamethasone and gentamicin injections, vestibular nerve section surgery 2019 (horrendous recovery) then labyrinthectomy with cochlear implant 2021

As a result of the surgeries I have 24/7 tinnitus in my R)Ear

However like yourself I suspect that the multiple vestibular symptoms that are ongoing are also IJV related and did I go through unnecessary treatment. !!!

But my case was so severe that I did get some reprieve from the “drop attacks” relentless nystagmus and vertigo.

it’s all so bewildering.

I have been under the care of this Otolaryntologist since 2018 and he is amazing, and is the doctor who recently referred me for the imaging given his suspicion of IJV Compression.

There is scepticism among the medical profession if stylojugular syndrome is legit, but my response to those doubters is live in my body for 24 hours, experience my poor QOL and their opinions would soon change.

None of us choose this for ourselves, many of us have lost our careers, entity, self worth and joy for being able to live life spontaneously.

ItThankyou for the research papers

Warm Regards

Danni

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Oh my, poor you, that’s awful to have been through all those treatments/ surgeries!
Just to add another thought into the mix, but might be worth looking into superior canal dehiscence syndrome if you’ve not heard of it - this can cause balance issues & several members have been diagnosed with this alongside ES…the theory being that if there’s IJV compression, the increased intracranial pressure can possibly wear away the delicate bones in the ear, which can make a hole & affect it’s functioning. Just thought I’d throw that in! :hugs:

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@Dangles - I’m so sorry for all you went through with your ear/hearing, too! I joined a Meniere’s Disease forum a number of years after my diagnosis, & that is where I learned about drop attacks (which I never had) & labyrinthectomies (:scream:). I thought that procedure basically removes the ear’s “innards” so there’s nothing left that can cause tinnitus. It seems I misconceived that as by my definition, there would be nothing left for a cochlear implant to utilize for helping with hearing. Guess I should have looked it up.

We are in your ENT’s camp about IJV compression & “outside the box” problems it can cause, so I’m really glad you’re seeing someone who isn’t a naysayer about what we’ve learned from our members over the years.

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:heart::pink_heart::orange_heart::purple_heart::light_blue_heart::blue_heart::green_heart::yellow_heart:

Thankyou for your support.

I really feel heard in this group

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Hi I’m not in Australia but I have had surgery with Dr Elliott and Dr Rao. I am 4 months post surgery and it seems I have scar tissue at my surgical site. I am waiting to hear back from their team as to what they recommend. Happy to chat with you.

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@Gina1961 - We’ve had some members who’ve had successful cold laser therapy post op to help break down excess scar tissue. It’s important to see a therapist who is experienced with this as the laser must be kept away from the thyroid. Myofascial massage is another route some members have taken to help break down developing & excess scar tissue after surgery. I don’t know if you’d have access to either of those, but they could be a place to start.

Last suggestion is doing massage along your incision yourself using light pressure w/ your finger tips & a lubricant such as Bio Oil, coconut, avocado, or vitamin E oils to reduce friction can be helpful. There are videos on youtube as well with guidance for this type of massage.

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Thankyou. I will look into cold laser. I looked into Myofascial massage but everyone I contacted seems to be closed for 4 weeks because of Christmas :christmas_tree:

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I hope that you can find a treatment to help you @Gina1961 !

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Hi @Dangles I am in Australia but in the far far away land of Perth! I’m sure you’ll find someone closer to chat to, but my ENT here in Perth is a lovely man and is very happy to see ES patients, as well as a bunch of other interesting cases, like mine!

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@F-t - How are you doing these days? Did your surgery help relieve or reduce your symptoms?

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Definitely reduced the symptoms, but not fully relieved. I explain it as 80% less intensity, at 30% of the time. So basically it only bothers me when I’m relaxing on the couch or lying in bed. Not ideal, but much improved. These things are definitely trial and error, given the rarity, and a second surgery would likely diminish the last residual discomfort but it isn’t something I am actively pursuing. Thanks for asking. :blush: I hope you are well also.

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I’m glad that the surgery was helpful, & hope you can maybe learn to live with those remaining :hugs:

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